Comparison of the EQ-5D-Y-5L, EQ-5D-Y-3L and PedsQL in children and adolescents.

BACKGROUND: There is an increased use of Patient-Reported Outcome Measures (PROMs) in children and adolescents. The aim of this study was to compare the feasibility, concurrent validity and known-group validity of the EQ-5D-Y-3L (Y-3L), EQ-5D-Y-5L (Y-5L) and PedsQL self-report PROMs. METHODS: Five hundred and fifty children and adolescents, aged 8-15-years, with acute and chronic health conditions and a general population sample were recruited from schools and hospitals in Cape Town South Africa. All respondents self-completed the Y-5L, PedsQL, Self-Rated Health Question and Y-3L. Feasibility of the measures was determined by comparing the number of missing responses. Convergent validity was assessed by Spearman's and Intra-class correlations on the corresponding items and summary scores respectively. Known-groups validity across health conditions was assessed across the summary scores of the measures with analysis of variance (ANOVA). RESULTS: The Y-3L and Y-5L had a total of 1% and 3.5% missing responses compared to 19% on the PedsQL. Similar items on the PedsQL and Y-3L/Y-5L showed high correlations (> 0.5) and related items showed moderate correlations (0.3). PedsQL total score was moderately and significantly associated with Y-3L and Y-5L level sum and VAS scores. The Y-3L and Y-5L level sum and VAS scores showed significant differences between known health groups whereas the PedsQL only showed differences between those with acute and chronic illness. CONCLUSION: The results of this study show that the Y-3L and Y-5L showed comparable psychometric validity to the PedsQL. When considering the choice between the PedsQL, Y-5L and Y-3L these study results indicate that the EQ-5D-Y instruments (Y-3L and Y-5L) are recommended for studies assessing known-group validity or where missing data should be minimised. The PedsQL generic measure may be preferable in future studies including the general population where a ceiling effect is anticipated. When considering the choice between the Y-5L and the Y-3L there was no systematic difference in the validity between these instruments or between the Y-3L or Y-5L and the PedsQL. Thus, the selection of EQ-5D-Y measures to include in future studies should be guided by the characteristics of the population to be tested.

Comparing Measurement Properties of the English EQ-5D-Y 3-Level Version With the 5-Level Version in South Africa.

OBJECTIVES: This study aimed to compare the performance of the EQ-5D-Y 3-level version (Y-3L) and the expanded 5-level version, the EQ-5D-Y 5-level version (Y-5L). METHODS: Children or adolescents with an acute or chronic health condition and from the general population completed the Y-5L and Y-3L self-report questionnaires. The performance of the Y-5L and Y-3L was determined by comparing feasibility, redistribution of dimension responses, discriminatory power, validity, and test-retest reliability. RESULTS: A total of 550 children/adolescents completed baseline measures and 173 completed repeat measures. The ceiling effect decreased by 15% from the Y-3L to Y-5L. Informativity of dimensions improved by 0.094 on the Y-5L. There was a range of 4% to 9% inconsistent responses moving from the Y-3L to Y-5L. Convergent validity of the visual analog scale and Y-3L and Y-5L dimensions was similar and weak to moderate (rs range 0.18-0.38) but similar and strong on paired Y-3L and Y-5L dimensions: Kendall tau B (range 0.69-0.80) and gamma (range 0.92-0.98). The Y-5L and Y-3L showed moderate to substantial agreement for test-retest reliability across dimensions and visual analog scale scores in stable chronic health conditions and fair agreement for the general population. CONCLUSION: The Y-5L is a valid, reliable extension of the Y-3L for children or adolescents across health conditions and healthy children/adolescents. The expanded levels reduced the ceiling effect. The relative informativity of report across dimensions increased on the Y-5L compared with the Y-3L with retention of the evenness of reporting. The convergent validity and test-retest reliability of the Y-5L was comparable with the Y-3L.

Measurement properties and responsiveness of the EQ-5D-Y-5L compared to the EQ-5D-Y-3L in children and adolescents receiving acute orthopaedic care.

OBJECTIVE: The aim of this study is a head-to-head comparison of the instrument performance and responsiveness of the EQ-5D-Y-3L and the expanded English version of the EQ-5D-Y-5L in children/adolescents receiving acute orthopaedic management in South Africa. METHODS: Children/adolescents aged 8-15 years completed the EQ-5D-Y-5L, EQ-5D-Y-3L, self-rated health (SRH) question and PedsQL at baseline. The EQ-5D-Y-5L, EQ-5D-Y-3L and SRH question were repeated after 24 and 48 h. Performance of the EQ-5D-Y-5L and EQ-5D-Y-3L was determined by comparing feasibility (missing responses), redistribution of dimensions responses, discriminatory power, concurrent validity, and responsiveness. RESULTS: Eighty-three children/adolescents completed baseline measures and seventy-one at all three time-points. Reporting of 11111 decreased by 20% from the EQ-5D-Y-3L to the EQ-5D-Y-5L. Informativity of dimensions improved on average by 0.267 on the EQ-5D-Y-5L with similar evenness. There was a range of 11-27% inconsistent responses when moving from the EQ-5D-Y-3L to the EQ-5D-Y-5L. There was a low to moderate and significant association on the EQ-5D-Y-3L and EQ-5D-Y-5L to similar items on the PedsQL and SRH scores. Percentage change over time was greater for the EQ-5D-Y-5L (range 0-182%) than EQ-5D-Y-3L (range 0-100%) with the largest reduction for both measures between 0 and 48 h. For those who respondents who showed an improved SRH the EQ-5D-Y-5L and EQ-5D-Y-3L showed significant paired differences. CONCLUSION: The English version of the EQ-5D-Y-5L appears to be a valid and responsive extension of the EQ-5D-Y-3L for children receiving acute orthopaedic management. The expanded levels notably reduce the ceiling effect and has greater discriminatory power. Concurrent validity of the EQ-5D-Y-3L and EQ-5D-Y-5L was low to moderate with similar PedsQL items and SRH. The EQ-5D-Y-5L generally showed greater change than the EQ-5D-Y-3L across all dimensions with the greatest change observed for 0-48 h. Responsiveness was comparable across the EQ-5D-Y-3L and EQ-5D-Y-5L for those with improved SRH. Greater sensitivity to change may be observed on comparison of utility scores, once preference-based value sets are available for the EQ-5D-Y-5L.

The performance of the EQ-5D-Y-5L compared to the EQ-5D-Y-3L in children and adolescents with cerebral palsy (CP).

Objectives: The aim of this study is to compare the performance and validity of the EQ-5D-Y-3L (Y-3L) and EQ-5D-Y-5L (Y-5L) in South African children and adolescents with cerebral palsy (CP). Methods: Children/adolescents with CP and those from the general population completed the Y-5L, Y-3L, and PedsQL. Physiotherapists at the school classified participants' functional ability on the Gross Motor Functioning Classification System (GMFCS). Results: Fifty-one children/adolescents completed the measures. The ceiling effect had a 44% relative reduction for Mobility and floor effects decreased across all dimensions except for Looking After Myself when moving from the Y-3L to Y-5L. Informativity of dimensions improved on average by 0.27 on the Y-5L with similar evenness. There was a range of 6-16% inconsistent responses when moving from the Y-3L to the Y-5L. Convergent validity was strong on paired Y-3L and Y-5L dimensions: Kendall's Tau B (range 0.53 - 0.85) and Gamma (range 0.79 - 0.99). There was significant moderate association between Y-3L and Y-5L with similar items on the PedsQL. The physical dimensions of Mobility, Looking After Myself and Usual Activities were significantly associated with GMFCS with those having less independent mobility reporting more severe problems on dimension scores. Conclusion: The Y-5L showed a notable reduction in ceiling and floor effects, improved discriminatory power, higher criterion validity with the GMFCS and similar concurrent validity with the PedsQL as the Y-3L. It is recommended that the Y-5L is further tested for reliability and responsiveness in this population group so that its utility for detecting change in clinical trials or as a routine outcome measure can be determined.

How does the EQ-5D-Y Proxy version 1 perform in 3, 4 and 5-year-old children?

BACKGROUND: The EQ-5D-Y Proxy is currently recommended for Health Related Quality of Life (HRQoL) measurement in children aged 4-8 years of age. However, it has only been validated in children over six years of age. The aim of this study was to investigate the performance of the EQ-5D-Y proxy version 1 in children between the ages of 3-6 years. METHODS: A sample of 328 children between 3 and 6 years of age were recruited which included children who were either acutely-ill (AI), chronically-ill (CI) or from the general school going population (GP). The EQ-5D-Y Proxy Version 1 and the PedsQL questionnaires were administered at baseline. The EQ-5D-Y Proxy was administered telephonically 24 h later to children with chronic illnesses to establish test-retest reliability. The distribution of dimensions and summary scores, Cohen's kappa, the intraclass correlation coefficient, Pearson's correlation and Analysis of variance were used to explore the reliability, and validity of the EQ-5D-Y for each age group. A single index score was estimated using Latent scores and Adult EQ-5D-3 L values (Dolan). RESULTS: The groups included 3-year olds (n = 105), 4-year olds (n = 98) and 5-years olds (n = 118). The dimension Looking after Myself had the greatest variability between age groups and had the highest rate of problems reported. Worried, Sad or Unhappy and Pain or Discomfort were not stable across time in test-retest analysis. The Visual Analogue Scale (VAS), and single index scores estimated using the latent values and Dolan tariff had good test retest (except for the latent value scores in a small number of 4-year olds). EQ-5D-Y scores for all ages had small to moderate correlations with PedsQL total score. The EQ-5D-Y discriminated well between children with a health condition and the general population for all age groups. Caregivers reported difficulty completing the Looking after Myself dimension due to age-related difficulties with washing and dressing. CONCLUSION: The dimension of Looking after Myself is problematic for these young children but most notably so in the 3 year old group. If one considers the summary scores of the EQ-5D-Y Proxy version 1 it appears to work well. Known group validity was demonstrated. Concurrent validity was demonstrated on a composite level but not for individual dimensions of Usual Activities or Worried, Sad or Unhappy.. The observable dimensions demonstrated stability over time, with the inferred dimensions (Pain or Discomfort and Worried, Sad or Unhappy) less so, which is to be expected. Further work is needed in exploring either the adaptation of the dimensions in the younger age groups.

Does the child's health influence the caregiver's health using the EQ-5D instruments?

BACKGROUND: Health- related quality of life (HRQoL) is an important aid in medical decision making. The child's health may influence the caregiver's health due to their intimate relationship. OBJECTIVES: The aim of this study was to investigate the influence of the child's health on the caregiver's health as measured on the EuroQoL Youth and Adult instruments. METHOD: A sample of 50 caregivers and their acutely-ill children, aged 3-6 years, was recruited from a paediatric hospital. Each caregiver completed the EQ-5D-Y, a proxy rating of their child's HRQoL, and the EQ-5D-3L, a self-report measure of their own HRQoL, at baseline, 24 and 48 hours. The correlation between the caregiver and the child's health over time was established. Forward stepwise multiple regression analysis was performed to establish the relative contribution of the child's VAS score to the caregiver's VAS score. RESULTS: The results indicated that the child's and the caregiver's VAS ratings were significantly correlated over time, with an improvement in HRQoL scores over 48 hours. The child's proxy VAS rating accounted for 21% and 18% of the variance in the caregiver's VAS score at baseline and 24 hours, respectively, which was higher than self-reported problems on the caregivers EQ-5D-3L dimensions. CONCLUSION: The health of the caregiver is reported to improve as the perceived health of the child improves. The proxy rating of the child's health influences the caregiver's self-reported health more than their reported problems on the EQ-5D-3L. CLINICAL IMPLICATIONS: Improving the HRQoL of the child will lead to improved HRQoL in the caregiver.

The use of the EQ-5D-Y health related quality of life outcome measure in children in the Western Cape, South Africa: psychometric properties, feasibility and usefulness - a longitudinal, analytical study.

BACKGROUND: The EQ-5D-Y, an outcome measure of Health Related Quality of Life (HRQoL) in children, was developed by an international task team in 2010. The multinational feasibility, reliability and validity study which followed was undertaken with mainly healthy children. The aim of this study was to investigate the psychometric properties of the EQ-5D-Y when used to assess the HRQoL of children with different health states. METHOD: A sample of 224 children between eight and twelve years were grouped according to their health state. The groups included 52 acutely ill children, 67 children with either a chronic health condition or disability and 105 mostly healthy, mainstream school children as a comparator. They were assessed at baseline, at three months and at six months. An analysis of the psychometric properties was performed to assess the reliability, validity and responsiveness of the EQ-5D-Y in the different groups of children. Cohen's kappa, the intraclass correlation coefficient, Pearson Chi-square, Kruskal-Wallis ANOVA and effect size of Wilcoxon Signed-rank test were used to determine the reliability, validity and responsiveness of the instrument. RESULTS: The EQ-5D-Y dimensions were found to be reliable on test-retest (kappa varying from 0.365 to 0.653), except for the Usual Activities dimension (kappa 0.199). The Visual Analogue Scale (VAS) was also reliable (ICC = 0.77). Post-hoc analysis indicated that dimensions were able to discriminate between acutely ill and healthy children (all differences p < 0.001). The acutely ill children had the lowest ranked VAS (median 50, range 0-100), indicating worst HRQoL and was the only group significantly different from the other three groups (p < 0.001 in all cases). Convergent validity between all similar EQ-5D-Y and PedsQL, WeeFIM and Faces Pain Scale dimensions was only evident in the acutely ill children. As expected the largest treatment effect was also observed in these children (Wilcoxon Signed-rank test for VAS was 0.43). Six of the nine therapists who took part in the study, found the measure quick and easy to apply, used the information in the management of the child and would continue to use it in future. CONCLUSIONS: The EQ-5D-Y could be used with confidence as an outcome measure for acutely-ill children, but demonstrated poorer psychometric properties in children with no health condition or chronic conditions. It appears to be feasible and useful to include the EQ-5D-Y in routine assessments of children.

Impact of using the ICF framework as an assessment tool for students in paediatric physiotherapy: a preliminary study.

OBJECTIVE: To determine if clinical assessment of children with neurological conditions by physiotherapy students was improved through the overt use of the International Classification of Functioning, Disability and Health (ICF). DESIGN AND PARTICIPANTS: A retrospective, pragmatic audit of practice using written patient assessments completed by third-year physiotherapy students. Assessments completed by third-year students in 2008 were compared with assessments completed by third-year students in 2009. The assessment format used in 2008 was very loosely based on the ICF model, while the 2009 assessments made rigorous use of the ICF approach. SETTING: Two schools for children with special needs to which physiotherapy students from the Department of Health and Rehabilitation Sciences, Faculty of Health Sciences, Division of Physiotherapy, University of Cape Town are sent for clinical exposure. METHOD: A score sheet was drawn up to evaluate specific criteria in each assessment, using a five-point marking scheme. The mark sheet was tested for reliability. All assessments were evaluated independently using the score sheet by two external physiotherapists who were blind to the purpose of the exercise. RESULTS: There was a significant difference between the scores obtained on the score sheet for the 2008 group and the 2009 group. The 2009 group obtained a median score of 60, compared with a median score of 50 for the 2008 group (median difference between groups 9.2, 95% confidence interval 4.2 to 14.1). The overall impression mark given to the 2009 group was also higher than that given to the 2008 group, with a median difference between the groups of 5.9 (95% confidence interval 3.2 to 12.7). It would appear that the 2009 students, using the ICF framework for assessing patients, were able to include more function-related information in their assessments, resulting in a more holistic assessment. CONCLUSION: Teaching students to use the ICF framework when assessing paediatric patients encourages clinical reasoning and an improved holistic approach to identifying the patient's problems in context. This, in turn, enables the student to plan a more appropriate intervention treatment, to the patient's benefit.